Dear Doctor: A Letter About Our Down Syndrome Diagnosis

Happy October! 

This month everyone is so excited about Fall, pumpkins and Halloween. October has another meaning for my family now. Today kicks off Down Syndrome Awareness Month! We have been celebrating Down syndrome and educating others during the month of October since our unexpected blessing was born three years ago! 

When Liam was born we had NO idea that he had Down syndrome. It was just one of those things that I knew the moment I looked into his eyes but we didn't know for certain until he was almost a month old. Every test and ultrasound during my pregnancy was completely normal and my risk factors were very low. I always forget the exact number but my chance of having a child with Down syndrome was something like 1 in 891. We were told our baby was textbook perfect so we never expected something like this could possibly happen!

Long story short he's an incredible little boy.  Down syndrome is nothing like how I imagined it would be and we quickly discovered that everything we thought we knew about this genetic condition was completely wrong!  Unfortunately that is very common. Most people we encounter have false facts and misconceptions about Down syndrome and part of my reality is living in a world where I have to justify my son's right to exist. 

To kick off Down Syndrome Awareness Month I'm sharing a Dear Doctor letter to the doctor who finally delivered the official diagnosis.  These amazing letters that showcase both the positive and negative diagnosis stories will be shared on the Down Syndrome Diagnosis Network's Facebook page during the month of October. 

Dear Doctor,

As I sat in the exam room cradling my tiny newborn you asked if we knew the results yet. It had been 5 days since the pediatrician at the hospital delivered his shocking suspicions in a manner that was not the best. The numbness had worn off by then but we were still in the dark about his diagnosis.  

You were absolutely certain that we would find out in the next few days but a week went by. And another week. And another. Still no answer. Every time we called the lab we were informed that they were having difficulty getting an accurate diagnosis. So we waited. 

We had already visited you 6 times for weight checks and my son was nearly a month old. You finally had enough. On the day we found out the results you and I stood side by side in front of the exam table. As you gently examined my son you insisted that we would have an answer by the end of the day. I could hear the anger in your voice. You said we had waited long enough and it was absolutely wrong to make us wait any longer. 

I'm certain you recognized the fact that I was a mom who just needed an answer. I just needed to know so we could move on with our lives in whichever direction that was supposed to be. I'm still not exactly sure why you did it but you stepped up to the plate when nobody else would. Perhaps it was the fact that you were a mom yourself. Perhaps it was the fact that you had a family member who had Down syndrome.  Either way, you were our advocate when we needed one the most.

As you opened the door to leave you promised that you were going to go straight to your office and call the lab. You smiled at me one last time then started to walk out. Something made you hesitate for a few seconds. You walked back in and asked, "Do YOU think Liam has Down syndrome?"

I looked you in the eye and replied, "Yes. I do." 

Your expression was completely neutral and you asked, "Why do you feel that way?"

I remember staring down at my precious boy and smiling as he gripped my finger. "Because a mother just knows." 

You smiled at me, nodded and walked out the door.

One hour later my phone rang.  I saw your number on the caller ID and took a deep breath. I knew, deep in my heart, that this was THE moment we had been waiting for.  I answered the phone and braced myself for impact.

"I have the results," you told me. "I don't like to make these phone calls but I feel more comfortable making this one because I know you already expected this and I know you are ready to hear the news. Liam does have Down syndrome." 

I didn't cry. I didn't feel my heart sink. I already dealt with those emotions. This was exactly what I expected to hear. I don't remember much more of what you said on the phone. I just remember letting out a sigh of relief over the fact that we finally knew and feeling thankful that we had someone on our side.

It has been 3 years since that moment. I am so much stronger and wiser than I was on the day you demanded those results. We have come so far yet life is still shockingly the same as it was before. We just have an unexpected blessing now who brings light, joy and love to each and every day. 

I just want to thank you for being there when nobody else would help us. I want to thank you for stepping up and demanding answers. I want to thank you for listening to me and caring about us. Most of all I want to thank you for caring about my son from the day you met him and always treating him like he matters.  

The moment you called with the results WAS the defining moment in our Down syndrome diagnosis. Those words sealed our fate. I am so thankful that you were the one to deliver the news.  I trusted you then and I trust you now. You are one of those doctors that EVERY doctor should strive to be. 

-A Downright Blessed Mom

Want to write a letter of your own? Anonymously let your doctor know how you think they did when they delivered the diagnosis by participating in DSDN’s Physician Feedback program: http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt

If you recently received a Down syndrome diagnosis connect with the DSDN to receive information, connections and support: www.dsdiagnosisnetwork.org

People are often afraid to ask questions about Down syndrome but I welcome those questions and answer with the utmost honesty. If you have anything that you would like to ask please comment with your question!  

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